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The growing number of hemophilia registries: Quantity vs. quality
Author(s) -
Keipert C,
Hesse J,
Haschberger B,
Heiden M,
Seitz R,
van den Berg HM,
Hilger A
Publication year - 2015
Publication title -
clinical pharmacology and therapeutics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.941
H-Index - 188
eISSN - 1532-6535
pISSN - 0009-9236
DOI - 10.1002/cpt.83
Subject(s) - harmonization , authorization , transparency (behavior) , computer science , quality (philosophy) , marketing authorization , data collection , data science , risk analysis (engineering) , business , computer security , bioinformatics , statistics , mathematics , biology , philosophy , physics , epistemology , acoustics
Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long‐term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an urgent need for a pan‐European or global strategy that supports consistent data. Therefore, transparency in data collection, harmonization of the database structures, and the convergence of scientific approaches are required.